Tuesday, September 11, 2012

Camilla is still seizure-free! The past 5 1/2 months have been great - her days are filled with laughter and her eyes seem clearer. Her actions are calmer, controlled and more deliberate. Her communication is clear and undeniable - though not with words - and she has learned several new signs. She is potty-trained (during the day) and is learing to dress herself. We are so grateful for our many blessings - especially the one named Camilla! We have been so happy to watch how she is growing and learning since the surgery.

On this journey with Camilla we have learned a lot about finding joy in what you have - in what surrounds you everyday - and not placing expectations on things, events or people. We have learned a lot about accepting our 'cross' and about meeting people where they are - meeting Camilla where she is rather - and not placing expecations on her. Now don't get me wrong I still have plenty of dreams and wishes for her but my happiness is not wrapped up in her fulfilling these things - my happiness is wrapped up in how far she has come and what she CAN do. I guess that's why I was so surprised last week when, out of the blue, she said a new word 'bye-bye'. Had I really gotten so accustomed to her communicating in other ways that I actually stood there, with my mouth hanging open and my heart just praising God, in total disbelief. She spoke! She spoke a new word! Since surgery Camilla has actually been less vocal than before and from all of the information that I read and everyone I talked to about this surgery and the children learning to speak it seemed that most advances were made very soon after surgery (days and weeks). So I guess I had chalked it up already that we would continue to communicate in other ways for awhile longer. I guess I was wrong because in just over a week Camilla has added 'no, blue, hi, and dada.' It's random sure but we'll take it! Praise God! I can't wait to see what He has in store next - maybe 'mama'!

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

You can't have a testimony - without the test! We have had several people contact us regarding the testimony we gave at Fairhaven Baptist Church several weeks ago, some blog-followers who were trying to get a DVD of our story, please know that we will be happy to share those with anyone who wishes to have one. You may email or message me directly or you can contact Fairhaven at 334-289-0712 (ask for Brandon & Kelley Smith's testimony) and one will be mailed to you at no charge. We are grateful to have the opportunity to give voice to Camilla's story and we feel that God is leading us to share with others. We are also grateful to the several churches and other groups that have scheduled Brandon and I seperately or together to speak. I'm very excited to see how God will use these opportunities to reach families being tested and to bring glory to His name.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

beWhat a fun day! Camilla's 7th birthday bubble-bash was great fun! We had bubbles of all sizes, shapes, colors; we had bubble wrap, bubble gum, bubble coloring and bubble bath all worked into the mix and Camilla thoroughly enjoyed them all. Seriously, I don't know that I have ever seen her have more fun than being elbow-deep in bubble solution for several hours straight. She wouldn't even leave the bubbles to blow out the candles on her cake - we had to bring the cake to her.

Officially this marked Camilla's first 'real' birthday party - friends and all. Typically we have just done very small parties with close friends and family because Camilla had such behavior and socialization issues that it made it difficult for her to be in large groups especially if there were lots of distractions and since she doesn't speak it made it difficult for her to befriend and communicate with other children. Also, in the past it has been a struggle of mine to see Camilla with children her same age. It was always just so difficult to see where she 'should be' developmentally - and birthday parties would
always just throw me into a funk. Those issues
just don't seem to bother me anymore - finding
joy in the blessings that surround me everyday
has to be one of the most gracious gifts God has
given me. Camilla is just that too, a joyous blessing, a 7 year-old joyous blessing.
Happy birthday my sweet angel!

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Monday, August 13, 2012

Wow!!! 7 years certainly does fly by when you're having fun. In all honesty I wouldn't call all of those 7 years fun (have you read the rest of the blog) but I can say that I wouldn't change a thing. There have been so many great times and great memories with my sweet 'baby angel' and God has used her in a mighty way to shape me into the person I am today. In fact, He has used her smile and her story to shape many people in many different ways. **Please pardon me for the retrospective and sentimental tone to this post - her birthday's are always a difficult time for me and for some reason I can never pinpoint exactly why. I just always find myself a little 'emotional' this time of year.**

Thursday, June 28, 2012

So last Sunday night Brandon and I shared our testimony with our Fairhaven Baptist Church family. It has actually been a very emotional week - reliving the journey to relive the journey. There were so many emotions, so many fears, so many tests and so many tears that I would have loved to have never revisited. But in all honesty, now that it is over, I'm really glad to have had a reason to honestly dive back into those first few years after Camilla began having seizures. It was quite theraputic to look back and see where we were as compared to where we are now and to realize just how God's hand was guiding us all along. I'm so thankful for the love, support and encouragement that was shown to us on Sunday. We do feel led to share Camilla's story with others and Sunday was a very important step in leading to that goal, if for no other reason than for us to see if we could handle it and to see if there would be a message that would reach people no matter the similarities or differences between their story and ours. We had originally intended to close our talk with a slideshow of pictures of Camilla but as time was running out I still couldn't get the music to load properly so we scratched it but I thought I would share it here - I know how to do the music here :) Oh and it is worth noting that we are past the 3 month mark (March 26th-June 26th) and we have still not seen a seizure!!! Praise God from whom all blessings flow! This is the longest she has been without seizures since 6mo old(and there were only 2 other breaks-one for 5 weeks and one for 3 months)!!! "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Monday, June 11, 2012

Sunday, June 10, 2012

Each year Children's Hospital hosts an event for their patients and families. Last year they rented out Alabama Adventure for an evening and this year it was the Birmingham Zoo. They partnered with Chick-Fil-A to provide an absolutely wonderful evening for these special kids. Not only was the weather perfect, not hot and a breeze blowing, but there were no lines anywhere and it was like our own personal zoo experience. The staff was so friendly and really tried to help the kids enjoy the animals, which is something Camilla has never been able to do in the 3 or 4 other trips to the zoo we have made. She especially noticed the flamingos, giraffes, elephants, tiger and gorilla. My favorite memory was during the sea lion show when he hopped up on the side of the pool and waved and barked and Camilla waved and barked back (amazing how they did both so similarly lol). The Children's Hospital clowns were there painting faces and Chick-Fil-A was handing out stuffed cows, gummy bears, free drinks, paper fans and cow hats every time you turned around. Crosby's favorite part was of course the 'choo choo' but he really enjoyed the animals as well. Thank you Children's Hospital of Alabama, Chick-Fil-A and The Birmingham Zoo for a wonderful 'Dreamnight at the Zoo'!

Friday, June 8, 2012

I'd like to apologize - I've been slacking on my updates and there's really no good reason. Except, of course, if you count that fact that it's summertime and my babies and I have been too busy having fun to do much else! So far our days have been filled with the park, slip-n-slide, swimming, Vacation Bible School, sleeping late, the zoo, golfing, fishing and naps! I can't wait to see what the rest of the summer holds :) As for Camilla - SHE IS DOING GREAT! We still have not seen any seizures and even though there was a small amount of activity in her right parietal lobe on the EEG we are thankful for 2 1/2 months of seizure-freedom. Once we reach 3 months we will be celebrating the longest she has gone without seizures since she was 6 months old (the one other seizure-free period was at the beginning of the Ketogenic Diet when she was about 10 months old). She has been sleeping so well these days now that the 'white noise' has been quieted in her brain that in the past has robbed her of sleep and so many other things. The first week out of school she was sleeping until 10:30 each day and she is now averaging waking about 9:00 each morning. The general rule of thumb in our house - if Camilla's brain is sleeping DON'T WAKE IT UP! I really believe her body and brain are catching up on some much needed rest. During the day Camilla is showing signs of being more aware than she ever has been before. She just seems to be more 'present' in the moment with us and seems to be processing our words, asessing situations and reacting so much more typically. These characteristics are allowing her to make great strides in many areas but the most noteable being in potty-training (and Mom lets out a big WOO HOO after almost 7 years of diapers). Camilla is consistently letting us (and others caring for her) know when she needs to go by saying 'abath'. We are to the point where we are beginning to trust leaving the house with her wearing panties and there have been very few accidents to date. We are so proud of her and she is proud of herself as well. There are so many positives to mention that I couldn't possibly remember them all but I'll try to list a few: she is more steady and not shaky, she laughs a lot, she plays well and interacts with Crosby, she throws fits when she doesn't get her way (yes believe it or not this IS a positive), she is learning to dress herself, she continues to eat well, she helps me around the house (throwing things away, washing dishes, cleaning up spills and loading/unloading laundry), she is playing with toys appropriately these days, and the list could just go on and on. It seems like every day we are finding new accomplishments, large and small, to celebrate. I will mention one negative, Camilla has been very quiet these last couple of weeks. We are having to provoke her to get her to say much of anything and we certainly aren't hearing any new words. Even with the potty-training, the first couple of weeks she would constantly say 'abath' but she is now coming and taking me by the hand and leading me or just getting right in my face and staring in my eyes to let me know she has to go to the bathroom. We are very confused and frustrated by this silence. Back to the positives - she is adding more signs to her vocabulary. She will now regularly sign 'please' and 'thank you' in addition to her usual 'more' and 'eat'. We will begin adding two more new signs next week (it seems that focusing on one or two at a time for her to learn and do works best even though I do a lot of signing throughout each day to label objects and actions). We continue to be on the same medications as before and are waiting and watching with anticipation as her hair grows longer everyday over the completely healed scar. I think this about sums up her progress for now. For all of my epilepsy moms I did want to let you guys know that Camilla's resection was officially a right temporal lobectomy and right frontal topectomy - just FYI. Also, several posts back I asked you guys to pray for how our family would properly share Camilla's story and use her for His glory and He has answered our prayers. We feel we are being led to speak about our journey with Camilla to various different groups and organizations and God is opening these doors. Our first speaking engagement will be to share our testimony with Fairhaven Baptist Church on June 24th at the 6:00pm service. Brandon will also be speaking at the Brotherhood Breakfast on the 3rd Sunday in July and there are several other opportunities pending for us together and seperately. We plan to share the details of her diagnosis, the challenges that we've faced, how we've gone from enduring to enjoying life with a special needs child and how God has been there all along..."For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, May 22, 2012

Camilla has gotten to where she will do a really 'cheesy' grin when you snap a picture and say 'cheese' - here she is 'cheesing' it with Dr. Blount(neurosurgeon) and Gigi(his nurse practioner)at her last check-up.
**I'm trying to get the blog up-to-date, pictures and all, and I think I finally figured out the problem I was having uploading pictures so hopefully I will get caught up and back to posting regularly :)

We spent yesterday at Children's for Camilla to undergo a 2hr EEG, her first since surgery, to determine what is now going on in that pretty little head! It was very difficult to hook her up for this test (as usual) and we had to use a papoose board for only the second time ever. Once she was hooked up though she was calm and happy even smiling and laughing to pass the time. After the test we saw Dr. Kim who gave us the results. The verdict: there is still spiking in the right parietal lobe. Are we upset at all by this news? Heck NO! We still have not seen any seizures and Dr. Kim stressed that this activity could very well dissipate by her 6 month EEG. Realistically we know that any abnormal activity is not good news but we don't really put our hope in EEG's now do we? "My hope is in you Lord, all the day long. I won't be shaken by draught or storm..." Anyone else like that song too? I plan to do a very detailed update tonight to brag on all the great things going on with Camilla right now!
"For I know the plans I have for you," declares the Lord "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Thursday, May 17, 2012

I just wanted to let everyone know that some sweet people at our church have gotten together and are hosting a 5K for Camilla this Saturday, May 19th. Registration begins at the Demopolis City Landing at 7:00am with the 5K and Kids Fun Run beginning at 9:00am. The entry fee is $20 and includes a t-shirt. If you need more information or would like to participate or volunteer you can leave me a message here or email me at kelleyjsmith@yahoo.com Thanks to everyone involved and Camilla can't wait to be there and cheer everyone on!

Sunday, May 6, 2012

Bear with me - I've been trying to update the blog for four or five days now with some pictures and I'm having some space 'issues' with blogger. Hopefully I will have that resolved soon and will be able to post the slideshow from surgery and do a thorough update on how Camilla has been doing. For now I hope you'll settle for a quick update - she's GREAT! No seizures so far and the only real 'issue' we are dealing with at this time is the fits that she is having daily. These are 'I'm not getting what I want' and/or 'I can't talk to you to make you understand what it is I want/need/is hurting me' fits and since she is approaching 70 lbs., is very tall for her age and is stronger than most adults I know it is becoming increasingly difficult to deal with her during these fits. Please pray for this specifically - pray for her frustration, all of our understanding, physical and mental strength for Brandon and I and for us to find an effective way to deal with her when these fits arise (which has been 2-3 times daily for the last several weeks.) Hoping for a detailed update soon and pictures! Oh and Happy Birthday to Crosby - he turns 2 tomorrow:)

Wednesday, April 11, 2012

Hope...wasn't it too perfect that our Sunday school lesson was entitled 'A Living Hope' this past Sunday. The words from Max Lucado just seemed to jump off of the page, "It may be just a coincidence that 'hope' and 'cope' rhyme, but it's a happy coincidence. If we can't see beyond our immediate circumstances in life, the outlook quickly turns to a shade of despair." My hope is in you Lord and I thank you for the promise of "...hope and a future..." I am so full of hope for Camilla and her future. She is doing GREAT! She is eating and sleeping well and seems to have regained most of her strength and ALL of her silliness :) We have not seen any seizures and we are very thankful for the last 16 seizure-free days (the record for her was when she was on the Ketogenic diet and went 3 months seizure-free...she was 1yo). Her incision seems to be healing well and so far we don't seem to be having the 'scabbing' issues that we had with her last surgery. We go for her first checkup with Dr. Blount tomorrow and will see what he has to say about how it is healing. We are still having to clean the wound twice daily. As for her progress in other areas: she seems to be processing language faster; she seems to be saying some new sounds-especially vowell sounds; she has picked up 3 new signs and will do them when prompted - thank you, please and more; she is showing some progress in potty training - PRAISE GOD for every accomplishment large or small :) Overall, like I said before, Camilla is doing GREAT. She has only had one day of not feeling very well since we have been home from the hospital and after some Tylenol she perked up quite a bit. I remain AMAZED at how well she has done through this whole process-she is such a trooper! We visited her school yesterday and she was thrilled to see her friends and teachers again - we will find out tomorrow when she can return to school. I want to thank EVERYONE for the outpouring of love and support, we are overwhelmed with the kindness that has been shown to our family. Specific prayer requests include: healthy healing for her incision and strength and patience for all during cleanings; no seizures; tantrums to disappear; delevopment; and for our entire family as we live and share Camilla's story for the glory of God. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a future." Jeremiah 29:11

Sunday, April 1, 2012

PRAISE GOD! Camilla is doing GREAT! PRAISE GOD! Who would have ever guessed that this time last week my 'baby angel' was lying in Children's hospital with a blood clot on her brain, not able to do much more than sleep and her doctors were using words like 'urgent', 'serious', and 'in trouble' to describe her situation. Not to mention too, that she was facing a major surgery the following day. Imagine that it hasn't even been a week since removing part of her brain and today, here we are, at home and she has been riding the golf cart, riding in her wagon, coloring with sidewalk chalk and even went to a resturant to eat Mexican food (one of her favs)yesterday. I will try to video her tomorrow and post some of the different things she is keeping herself busy with these days but it is absolutely AMAZING! God continues to have his hand on Camilla and so far we have seen no seizures, an amazing calm and lots of smiles. She is loving wearing hats but feels of her head often and then looks at me to say 'WHERE IS MY HAIR?' Camilla's appetite has returned fully (another praise) and she is no longer on ANY pain meds (even Tylenol or Motrin) just her regular assortment of anti seizure meds (which FYI she would have to be seizure free for at least one year before they would consider weaning some of those). Right now the only real daily challenge (besides healing and resting in general)is that we have to clean her incision twice a day with soap and water and considering the problems we had with scabbing-over (prevents new skin growth and increases chances for infection) with the Corpus Callosotomy incision we are having to be very thorough and diligent with our cleanings. Last time they almost took her back to the OR to remove scabs after about five weeks and we certainly DO NOT want to find ourselves anywhere near that situation again. So please pray for her comfort and patience during these cleanings and our strong stomaches and arms that have to hold her down and scrub :( Let me say again and again, thank you ALL for all of the prayers that have carried us through this time, they have been felt in a very real way. Thank you too for all of the gifts, cards, donations, food, messages, bracelets, t-shirts, texts, videos, songs, verses, etc... that have found us during these last few weeks. Even though we have not been able to respond to each gesture immediately, please know that each and every one seems to reach us at just the right moment to provide a smile or encouragement - whatever the case may be. What wonderful people we have been blessed to share our lives with - that would reach out to us during this difficult time in our lives - some we have known forever and some we are just meeting through this process. THANK YOU ALL for the blessings of your kindness. We continue to hold on to our hope and know that HIS perfect WILL will be done - whatever is to come 'it is well'. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Thursday, March 29, 2012

Home??? Didn't we just have major brain surgery Monday??? As I said before, God is showing off!!! As long as she has a good 'first-part' of the day today she will be discharged this afternoon. I'm so thrilled but also a little nervous at it being this soon. Camilla's swollen eyes started to open late yesterday afternoon and she was able to get up and do some walking. She even walked to the activity room here in the Burn Unit and was able to play with Crosby for about 30 minutes. We are about to try to get her up this morning to see if she will walk some more or maybe go for a wagon ride around the hospital. She is dealing with a little more pain today than yesterday but we were able to get a good dose of pain meds in her about an hour ago - she is still giving us major trouble taking all meds at this point.When Dr. Blount made his rounds a couple of days ago he said that she needed to be eating and drinking well, managing pain well and for the swelling to go down enough that she could see in order for her to go home and she has definitely met those hurdles. On one of Dr. Blounts visits he pulled out his cell phone and asked if we had strong stomaches, and we do, so he proceeded to show us pics he had taken during surgery showing the grids, the blood clot and the parts that were resected - WEIRD - not many people can say they've seen their child's brain! So anyway - no time for a long post - there's packing to be done :) "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 27, 2012

Wasn't it just too perfect that God moved her surgery to 'Purple Day' - a day celebrated once a year that creates awareness for epilepsy - because He sure has been using her to create awareness for epilepsy for about 6 1/2 years now. Thank you to everyone who wore their purple clothes, accessories, Camilla bracelets, etc... Now to pick up where we left off. During the day Sunday Camilla was fidgeting, restless and generally miserable but thankfully her vitals stayed strong and the steroids they were giving her kept the blood clot in check to hold her for surgery on Monday. Dr. Kim came in and was able to complete the motor mapping with few complications although the stimulation did trigger some seizures. Ativan was given following the mapping to be sure that no seizures would follow and to allow her body to get some rest prior to surgery. Camilla slept the better part of the afternoon, evening and into the night. As 2:00am rolled around Camilla began to wake and grow more and more aggitated as the morning went on, since she was an 'add-on' surgery we knew they would not be taking her back until around 11:00am for sugery. Well in those few hours leading up to surgery Camilla was as miserable as I have ever seen her. She was fighting, thrashing, screaming and crying constantly. Her head wrap was itching and she had tangled the wires coming out of her head with all of her moving and there was no consoling her pain and frustration. Between the hours of 3:00am and 11:00am she was given Benedryl, Morphine, Ativan and 2 doses of Versed (a pre-op drug to cause drowsiness and relieve anxiety)and none of these worked to slow her down, she was still fighting and having to be held down. Finally about 30 minutes before they came to get her for surgery she fell asleep - I'm sure it was from the shear exhaustion of fighting for so long. Surgery began at 1:20pm and she was returning to her room at 6:00pm. It made for a long, anxious day (but remember 1 Peter 5 6-11) but we were really just so excited to know that after this surgery we could begin the journey of healing. Coming out of surgery she looked so much better than when she had gone in - she was sleeping peacefully and during her moments of awakening her eyes were clear and free of pain and frustration. She was able to take her meds with a good bit of applesauce and did not experience any nauseau. She slept soundly most of the night last night, only waking for meds (which she is taking willfully now), bloodwork and vitals but immediately going back to sleep. She was taken down for a follow-up CT scan this morning at 5:30 but the resident has already been by to say that all looked good with that test. She is showing that her Sodium is low (common after this surgery) but they are taking the steps to correct that and will recheck at noon. We are still waiting on both Dr. Kim and Dr. Blount to do rounds today. Camilla really 'woke up' about 8:45 this morning and she was able to take her meds and she ate a whole container of yogurt and is drinking well this morning also. Our challenge for the day: her face is so swollen that she can't open her eyes at all. It is difficult to tell when she is sleeping or awake and expectedly she is scared and is having trouble understanding this even though we are constantly talking to her and telling her what is going on, who is in the room and that this will pass soon. Overall, it is easy to see that she feels so much better than she has all last week and that is such a blessing. I feel so much better knowing that she is on the mend whereas before we were just waiting on so much to happen including seizures, surgery and of course she also had the wires to contend with. Before we talk about prayer requests let's talk about praises: successfull surgeries - check - peace for all family - check - no seizures (maybe y'all prayed too hard about that for last week haha) - check - isn't our GOD AWESOME! By far though the biggest praise we have to celebrate is that the 3 areas that were resected were NOWHERE NEAR her motor strip so we did not even have to make the difficult decisions that were expected regarding compromises to her physical abilities - A.MAZ.ING GOD! Prayer requests: swelling to go down soon and Camilla's understanding and patience until it does; no seizures; eating and drinking to return to normal soon; and for God to reveal his plans as to how we all (including Camilla) are to share our journey and experiences to tell of his grace, patience, mercy, love and salvation over the last six years.

Sunday, March 25, 2012

So after the events of last night (see below) Brandon and I debated on whether or not to share everything that is going on because things are very scary and very touch-n-go at the moment but we decided that people have been so kind and generous and caring and that if we want to accurately tell her story we must tell the whole story. Around 2:00pm yesterday Camilla's EEG began showing seizure activity although we were not noticing and clinical presentation (not seeing her body react in any way). As the day went on things became more frequent and stronger and about 8:00pm she had 2 seizures that looked strangely different than anything we had seen before. They lasted for about 30 seconds and her face did nothing but twitch in all different directions the whole time. It was very frightening for us because we are not used to her seizures lasting that long. Dr. Kim (neuro) was called and she logged in from home to review the EEG and video to confirm seizure activity. After about 30 minutes of watching our nurse on and off the the phone she came in to say that indeed Camilla was having seizures and there was cause for concern because of the atypical presentation. For one thing the seizures were effecting the right side of her face and if you'll remember Camilla has had a Corpus Callosotomy (right and left hemispheres don't communicate anymore) and thus far has only shown activity in the right hemisphere of the brain (where the grids are) which controls the left side of the body. So how could she be seizing on the right side of her body - red flag. Dr. Kim also noticed that according to the EEG Camilla had been seizing continually for over an hour (not a clinical presentation) so she immediately ordered a dose of Lamictal to try and stop the seizure activity but had Ativan brought in just in case Camilla began having a tonic-clonic/grand mal seizure that lasted over 5 minutes. Before we could even finish giving Camilla the medicine the techs from radiology were in our room to take her down for a CT scan. Upon returning from the CT scan Dr. Blount (neurosurgeon) was standing at the nurses station reviewing the results. The verdict: Camilla has a blood clot that is located between the grid and the bone flap and we had some decisions to make quickly. Our options were to 1)go in immediately and get the clot out and we could leave grids in (since we have not gotten enough correct monitoring of her seizures) or we could take everything out, wait 10 days and start all over 2) wait until we have enough seizure monitoring to do the resection surgery or 3) do surgery Monday and give a resection our best shot. We (mostly Kim & Blount) chose option 3. We do not feel comfortable waiting past Monday to correct the clot for fear of it causing further damage. We don't want to put Camilla through any more surgeries than are absolutely neccessary and we don't want to come this far without having accomplished something. The doctors feel confident about 3 areas that have continued to show 'activity' since immediately following surgery. Would we love to see a typical seizure in order to see if there are any other areas affected and to see how these three areas react - sure - in a perfect world but we don't live in a perfect world. We knew there would be tough decisions, we know this one is not our first and won't the the last on this journey but this is what we ALL feel led to do. One thing to note is that we are monitoring Camilla like crazy today (I really don't know another way to describe it) they are watching everything and if she starts to show any deterioration in her vitals or her alertness (meaning the clot is causing problems) we will drop all plans and be in the operating room within the hour to pull everything out (and would start over in 10 days). So there you have it - the truth, the whole truth and nothing but the truth. This is Camilla's story - this is our journey. So how is everyone doing - we're good - no really - we're GOOD. We can feel God at work in the midst of this situation and she is HIS child and He is leading her care. Of course there are tears, we are human afterall but there is a peace that passes ALL understanding surrounding us. God is giving Camilla an amazing testimony and we look forward to how He will continue to use this little girl for His glory (remember - He has plans for her hope and her future). In searching and reading, these verses always find us and touch us: 1 Peter 5 6-11 "Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen." I will continue to update as possible. We covet your prayers during this time - I'm not even clear on the specifics to ask for but just how God leads you. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jereimah 29:11

Saturday, March 24, 2012

Camilla is still sleeping a lot today so I had a free moment and thought I'd post this recent family picture. We had them taken in February because we wanted some done while Camilla still had a head full of hair :) Aimee Reynolds took them and she did a fantastic job as usual! Thank you Aimee! And thank you again to all of the generous friends who continue to give gifts, contributions, prayers and loving words of encouragment. We appreciate you ALL so much.
We are still waiting for seizures. Camilla is growing tired of the hospital bed and getting restless on top of dealing with smaller issues such as a reaction to some leads on her back, leaking head wrap and the drain that has migrated and is now hanging in front of her eye. Praying for seizures to begin soon so that we can do the next surgery on Tuesday but we know that God is never late and His timing is perfect. Afterall, He sees the 'big picture' and we don't.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Friday, March 23, 2012

A group of friends and LoGo Pro have gotten together a project to make t-shirts for Camilla in order to raise awareness for epilepsy and donate funds to help with her medical expenses. This is the design that will appear on the shirts (design by Kirk Brooker). To order shirts please contact LoGo Pro (located on Strawberry Street behind Colony in Demopolis) or Michelle Etheridge at 334-654-1890. Shirts are available for a donation of $15. Thanks to all who helped get this project together - you make me smile.

Praise God - Camilla has had a quiet day. She has spent most of the day sleeping (an answered prayer after her restless night) and, with the exception of the motor mapping that had to be done today, she has not had to deal with many interruptions. The motor mapping was basically locating the areas of her brain in which her left facial and hand 'controls' are located so that once we are able to map the seizures we will know what can possibly be removed and what needs to stay. For now, Dr. Blount is content to monitor the head wrap and not do any further procedures to correct the leaks although Dr. Kim did note that with these leaks surgery would be better sooner than later due to possible infection. Other than these few details there is not much more to report today and hopefully our evening will remain uneventfull as well (unless of course seizures want to join us). We have appreciated today being able to just 'be still and know that HE is God' and remember that his timing is perfect. "For I know the plans I have for you" declares the Lord, "plans to proper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Thursday, March 22, 2012

Today has been a VERY ROUGH day for Camilla. She is not wanting to eat the applesauce that contains her meds including her Tylenol and Motrin and she is feeling more pain today due to that fact. Her right eye is swollen almost entirely shut and she is very agitated with all of the wires, monitors and IV's on her body. Around noon it was found that her drain was not working properly and her head wrap was becoming saturated with blood and fluid because it had no where else to go. Dr. Miller (Blount's resident) came in to replace the head wrap and once it was removed they discovered that the area around the grid wires was pulling open and needed stitches. Our options were to take her back to the OR to stitch it up under general anesthesia (prolonging possible seizures), give her pain meds through her IV and do the stitches here in the room (prolonging possible seizures), numb just the area around the wires with 2 shots then do stitches (shots would burn)or do stitches without anything. Unfortunately for several reasons stitches without anything was our most logical option. It was horrible - by far one of the most difficult things I've ever had to do - to hold her down (along with 4 others) while he put 2 stitches into the top of her head. And let's talk about her head - the incision is at least 12" and too many staples to count running across from ear to ear, the drain is right at the top of her forehead and about 8 large grid wires that seem to be 'growing' out of the crown of her bald little head. So needless to say, after the stitches, the rest of her day has been filled with lots of pain and frustration. We are still waiting on seizures to return. Surgery is definitely not tomorrow and we are hoping she begins seizing soon or we are looking at pushing back the originally scheduled surgery date of Tuesday. Specific prayer requests right now include pain relief, eating and drinking and seizures to start soon. I had planned to share more details but from the time I started writing until now Camilla's head wrap is showing signs of more blood and fluid. Dr. Miller is on his way back down. Prayers please...

Wednesday, March 21, 2012

My sweet Camilla - she is such a trooper. Yesterday was such a long day. Surgery lasted about 6 hours but "could not have gone better" according to Dr. Blount (surgeon. He removed a portion of the skull covering the right hemisphere (frontal and parietal lobes) and placed approximately a hundred electrodes into and onto the brain. After 'loosely' replacing the skull and wrapping her head up tight she has a large 'ponytail' of wires that are having to be closely guarded (along with a drain). These electrodes will now monitor precisely where the seizure activity is originating. The original plan was to monitor these for 7 days with the resection surgery being planned for next Tuesday. The report we recieved immediately following surgery was that there was already activity detected in several areas (which is unusual while still under the effects of general anesthesia which normally supresses seizure activity) and there has been talk of moving the resection up to Friday if they can get the information they need before then. This 'information' is based on her having seizures. We need typical seizures soon in order to move the surgery up but if not we are prepared for surgery on Tuesday also.
Coming out of surgery yesterday she looked perfect. Her coloring was good and she was not swollen at all. Today the swelling is setting in and she has been dealing with pain and nausea through the night and the most part of the morning. She has required Zophran and Morphine and did require additional blood this morning but now seems to be feeling better and is more active. It has been amazing to me the amount of constant care that has been required since surgery. We are in the Burn Unit which is another critical care unit but we are allowed to stay with her all the time (as opposed to PICU - PRAISE GOD) and she does have a 'one on one' nurse as well. Our night last night was very busy and long due to the constant care that I mentioned. They were continually changing tubes and wires, giving meds, checking vitals and on and on which made for a sleepless but 'well cared-for' night. She is finally starting to drink and eat well (and keep it down) and is able to take Motrin and Tylenol by mouth and the pain is starting to subside which is good news so that we can discontinue the Morphine as it too can further inhibit seizure activity.
As I type Camilla is playing with her ipad and eating green beans and mashed pototoes. She has been up (standing) several times today and seems to have good strength a stability still - even after showing initial signs of mild weakness in her left arm.
Specific prayer requests at this time are for her continued pain relief, comfort and tolerance; seizures to resume soon (I know it sounds crazy); for clarity in upcoming decisions; and continued peace for the entire family.
There are NO WORDS to describe the outpouring of love, support, encouragment, gifts and prayers that we have recieved over the last week. Please know that we are reading and treasuring each and every one even if we are not able to immediately respond. From the bottom of our hearts - THANK YOU, THANK YOU, THANK YOU for your kindness and for loving our sweet 'baby angel.'
I will hopefully update again later tonight.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 20, 2012

Surgery is over and we are waiting on the surgeon to come out and update us on the details. We were told that she is good and everything went as planned. PRAISE GOD!
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Camilla was taken back to the OR about 8:30 this morning and the surgeon got started about 10:30. We are expecting about 3 more hours until she is in recovery. So far, reports are good and things are going as planned.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Friday, March 16, 2012

packing - I have been packing for a week now and I still have so much more to do but I should have no problem being ready by Monday or being gone for a month. My only problem will be listening to Brandon complain about how much I pack :)
preparations - From arrangements for Crosby to paying bills and cooking extra dinner to ironing Brandon's work clothes for when he's back at work and we are still at the hospital I have been very BUSY with preparations. The 'busy' has been a very good distraction though, it helps me not to dwell on the 'what ifs' of the next few weeks.
people - People are already pouring out so much love for us. We have been recieving cards, letters, gifts, calls, emails, texts, etc... ALREADY and it just amazes me how people are reaching out...ALREADY. God is love and you people are definitely his hands and feet at work. I'll post pics once we are at the hospital of these but the 'well wishes' for after surgery from Camilla's classmates written on rainbows have been so moving... words written by children her age reading 'you are cured', 'you can talk to us', 'you are not scared' move me to tears every time I think of them.
prayers - We already feel surrounded by and lifted up by prayers. Peace is setting in and it is a welcome friend. Thank you all and please keep them coming. We know without a doubt that these next few weeks will be the most difficult we will ever endure. We also pray that they are some of our most dear - ones in which we will see miracles take place, ones in which dreams will come true and mostly ones in which God will be glorified. Specific prayer requests include peace for all of us but especially Camilla; comfort, understanding and tolerance for Camilla; safe and successful surgeries; clear and easy decisions; and no seizures following the last surgery.
Camilla - She is such a happy child. The last few days have been filled with so much laughter and other than her morning fits (she's not a morning person - she gets it from her Mommy) she is smiling and playing most of the day. Except, of course, during seizures and they are pretty bad right now. They have moved to the severe catagory and are lasting longer than usual and are very disturbing to watch even though we are only seeing 4-5 per day. We have been talking to her about the surgery and she looks at us with so many questions in her eyes as we explain things to her - especially the part about her not having any hair for awhile after this (this will be especially difficult for her vain Mommy too).
Thank you all so much for your prayers and for going through this journey with us all. If you want to get my (more frequent) facebook updates you can friend me at Kelley Jacobs Smith. Schedule for now is preop work at Children's in Birmingham at 2:00 Monday and return for grid placement early Tuesday morning, resection surgery is set for the following Tuesday.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 13, 2012

Finally...I am through redesigning the blog. I still have a few little things to add like the music and a slideshow of old pics but all of the important stuff is done. Whew...that was one of the BIG things on my list of 'to do's' before surgery. And yes we are counting down the days till surgery. We will leave Monday, March 19th to go up and take care of all of her pre-op work and will arrive at Children's early Tuesday morning March 20th. I will try to post a more thorough update later today.
During surgeries and the hospital stay I will be updating here on the blog as well as on facebook. If you would like to get my fb updates you can friend me at Kelley Jacobs Smith.
Specific prayer requests:
successful surgeries;
understanding, comfort & tolerance for Camilla;
clarity & peace regarding all decisions to be made;
no seizures following surgery.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Thursday, February 16, 2012

Bear with me...I'm in the process of trying to redesign the blog...and it is a process :)Hitting the high notes with Camilla...she's gaining weight and her appetite seems to be improving everyday...surgery still set for March 20th...seizures are moderate to severe right now and averaging 8-10 per day...thorough update coming soon

Wednesday, January 18, 2012

Sometimes I just don't feel like writing it all down, sometimes I don't have the time and sometimes I just procrastinate - lately it's been all three. No more putting it off though. Surgery is set for March 20th and time is already flying. Again, there is so much to do to prepare not only for the surgery but the hospital stay. Is is wrong to say I'm excited? There really were a lot of good things that came from her first surgery with regards to behavior and development (and it lateralized her seizures making the upcoming surgery possible where it was not before) so I'm excited about what this next surgery could bring. That being said - this surgery will be SO much more involved, more invasive, more risks, more time, etc... It is very serious and the journey to arrive at the decision for more surgery has not been as easy this time around. The determining factor - she's still having 5-12 moderate seizures every day.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future" Jeremiah 29:11 This verse found us during our decisions and preparations for the last surgery in May and it still pops up during the most odd and most perfect situations. This time around Romans 5: 3-5 keeps presenting itself "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint..." Looking forward to seeing how this verse works in our lives like Jer 29:11 continues to...

As for surgery, we will arrive at Children's on Monday, March 19 for preop work. On Tuesday they will perform the first stage of the surgery which will be to remove a portion of her skull and place grids on and into the frontal and parietal lobes of the right hemisphere (testing in Oct. narrowed to these areas). They will replace the skull but she will have wires and possibly a drain and we will be in a room where a nurse will be with us around the clock. The grids will monitor seizure activity for 5-7 days to narrow focal points to certain locations in these two lobes of her brain. After monitoring and motor mapping is complete her docs will come to us with the number of focal points and what the risks are for removing each of them (ie what do they control, how easy will it be to remove, etc...)and we will most likely have to make some pretty difficult decisions at this time. The following Tuesday they will go in and remove the areas that can be removed. We will be in the hospital 1-2 weeks for recovery and possibly 3-4 depending on the amount of therapy required for weakness of the left side of her body (referring back to the hard decisions).

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.